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Good morning. My DS(7) is flaring (for the first time since beginning treatment) and I'm struggling with how to manage school as his OCD, tics and attention issues are increasing. I'm interested in hearing how you manage PANS/PANDAS flares and school. What I'm wondering is: Do you send your child to school when they are flaring? What do you if you kid will go to school (isn't refusing and is able to) but isn't able to "get any work done"? Does your child have special accommodations? How does the school manage the accommodations in light of the fact that at another point your child might not need them? Does anyone have advice or any wisdom about how to manage school during flares? I hate the idea of him sitting doing nothing during writing time- feeling bad about the fact that he simply can't getting any words down on paper. The teacher is currently trying a timer, but even that makes me feel so sad for him. I'm concerned it might make him feel anxious and how helpful is it if he actually can't do it? I greatly appreciate any advice or suggestions.
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DD6 had a major meltdown in school today that landed her with an in school suspension and the response to the stimulus was way out of proportion. This is on DAY 3 of 1st Grade!!! ...With LOTS of supports in place... I'm thinking that we may have to home school or hospital school or something. She's dealing with Lyme and Bartonella which I suspect was congenital but Idk. We've been treating Lyme since mid-January and she herxed horribly. Any thoughts? Any advice?
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- lyme
- bartonella
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Hi all, I bought, read, and then bought more of the two new books that were ju a thought published on pandas/pans and school. They are both excellent. They've achieve have their own style and lots of content. I bought them on amazon and got copies for kiddos teachers this year...
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SB277 has eliminated the personal beliefs exemption for vaccines in CA. Now CA is one of only 3 states w/only medical exemptions for vaccines. There is no religious exemption. The only way to avoid mandated vaccines for those who are unable to obtain a medical exemption will be to homeschool. This is a slippery slope. We need to protect parental rights and informed consent. PANDAS/PANS kids are especially vulnerable to vaccine complications yet it is uncertain/unlikely if PANDAS kids (or their siblings) will be able to obtain medical exemptions. If you are a registered voter in CA, please sign the referendum. There are only a few more days left. Here is a list w/signing locations: http://sb277referendum.com/where-to-sign/
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- california
- SB277
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Hi all, For those of you who have school aged, ragey PANDAS, what is your plan for the summer? I started out as SAHM, moved into a fulltime caregiver to my PANDA and am now a homeopath and SAHM. Because I am supposed to be a SAHM I can't fathom or really afford to send my PANDA to summer camp all summer. However, this is truly what she needs. School breaks kill her, and in turn our family. If I could let her go to summer camp each week, she would actually love it. She would limit her rages to home and probably everyone would have a decent summer. Does anyone have thoughts on this? What do the rest of you do? An insane idea entered my mind today. Way back when, I thought I might homeschool my children. I don't think we would be alive if that had actually happened. But has anyone ever approached summer as a homeschooling term? My reason for thinking this is the routine. However, my PANDA is 9, has had this for over 6 years, and won't do anything she doesn't want to do when she is at home. My idea could be a great one or could be setting me up for the worst summer of my life. Anyone have any thoughts? I also have 2 other children and one of them is a baby. FA
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Hi there - would love to hear what people are doing regarding school. My DD is in middle school, so she switches classes all day long. She has a very hard time making it through the day. All the teachers and most kids knows she has TS, but she still is embarrassed and holds back louder tics then ends up doing softer, smaller ones more frequently, and then can't concentrate. She has a 504 and a modified plan where she can leave the classroom at any time and even does some half days to take the edge off. But it's still so tough. Thinking about home school/online learning but hate to take her out of the regular school setting. What do you all do? Does anyone home school? Special/private school? Would really love to know your experiences and what works/doesn't. Thank you!
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- Tourette Syndrome
- Anxiety
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